tammyokc

Hey Steph, just read this! Sorry you're feeling so bad. I only take Imitrex for my migraines. Nothing else makes my headaches or migraines better. It does make my heart beat a little faster but that's it. Yikes. Let me know when you are feeling better! Hope it's not any of the other meds that you are taking and they are all interacting. I took Zomig once in my life but it was before my POTS was so bad and didn't notice any bad reactions, sorry no help there from me...

Diana, what dose are you taking? 1, 2, or 3 mg?

Oh Em! You know I have your same trouble!!! I totally feel for you girl!! I have tried the Natural Calm to help with constipation and it did relax me. But watch out if you don't have constipation cause it can cause diarrhea. Anyway, try anything! One thing I do if I haven't slept in a long time is just take a little more ambien. Last time we talked you said you take 12.5 mg. Well take more one night. Or let it dissolve under your tongue just a bit and then swallow it so it will get faster into your blood stream. I don't suggest this all the time, just in time of desperation. Wish I had more tricks for you!!!! The Lunesta didn't work great for me but I may keep trying. Maybe you could try a 1 mg sample from your doc. Also, my bp falls so low in the night it keeps me up. 77/45 some nights. I keep my BP monitor on my bed and that's how I know it goes so low. My heart beats like Gena's and I know it's because my BP is so low. Hang in there!

Julia, regardless what your diagonosis is, we are all in this together. We all have the same problem...health issues! They are all awful, they make our lives feel full of non-functioning, limited, worthless people at times and we are not that!!! We may have limitations, we may not function like "normal" people, and we are certainly not worthless. I too am so sick of POTS or whatever we all have. Who cares what we have, we feel sick and crazy at times and on the brink of no where's ville. It's so easy to just want to give up... But Julia, you hang in there. You look around at those that love you and need you and can't live life without you. This is a set back. It seems most of us get those more than going forward. Try and just get through each minute okay. I know it seems impossible. You are not crazy! Going to the ER just makes you more depressed cause they don't know what to do either, try not to give into the utter dispair of feelings you are having. I'm sending up many prayers for you right now, so hang on, we all love and care for you!!!!!

Oklahoma City here... Think I'm the only one.

Yes, Lunesta is the latest sleep drug. It comes in 1, 2, or 3 mg but is time released so you can't cut it in half. I like that I could cut my ambien in half but like I said, I'm becoming tolerant. I was disappointed with Lunesta because I was in hopes it would work like my ambien used to and put me to sleep right away but Lunesta made me feel sweaty and dizzy and I had a terrible taste in my mouth and my BP kept dropping. I guess I'll try it again a little later.

Hi everyone, I have taken Ambien for 6 years now for sleep and LOVED it but am becoming tolerant. I take up to 10 mg or 20 mg a night. I have tried Lunesta at 2 mg but it didn't put me to sleep and made me feel sweaty and weird. Anyone else try it?

I hate drugs but desperate times call for desperate measures. I am thankful Ambien works for me but I tell ya, I wonder if I've taken it so long it's causing long term side effects (been on it six years). I am going to try the new drug out this week called Lunesta. I see my sleep doc on Friday, I'll let you guys know!

Gena, in response to one of your posts... "This is what causes me to fall in the pots hole - my heart going whacko and insomnia and anxiety. It seems like everyone else in the hole seems to get here more so because of fatigue, dizziness or weird pain issues...How many of you fall in the hole mainly due to issues with tachycardia, painful, forceful heartbeats, chest pain, insomnia, low BP and anxiety? I envy those who say they could sleep 24 hrs a day! I know the grass is always greener on the other side, right? I guess I just want to know that I'm not alone." That is me to a TEE!!!!! I only dream of sleeping all day let alone one minute. I am exhausted all the time but I can never sleep and I am not exaggerating!! I never yawn, never can close my eyes, I'm just wired but never tired!!! I take Ambien, have for 6 years and w/o it I would not sleep!!!! My insides are always so wired I feel like I'm having a panic attack 24/7!!!!!! I can have some calmer moments and then BAM, there goes my heart, the adrenaline, and the anxeity with no warning... Just wanted to let you know you are not alone!!!

Hi Emily!! I know how you feel about keeping up with everyone and trying to read but can't respond cause you're too sick. I feel so much like you and I do wonder if my ambien and being on it so long causes some of my problems. Do you ever think your body is so use to it all night that all day it is withdrawing from it? Are you going to try the new sleep med that comes out today? Lunesta by Sepracor. I see my sleep guy on Friday and I'm sure if it's in, I'm gonna try it. Anyway, I feel so much better after I take my ambien, I feel calmer, my pain stops a little, I can think better and my personality returns, so I wonder if I've screwed up my POTS even more by taking ambien for years. Your thoughts? Also did you say you take Xanax during your most adrenalic times? If so do you take Xanax or the generic Alprozolam? I tried the generic and am still trying to steady myself after .5 mg. Don't know if I should pay a fortune to try the name brand. Thinking of you my friend!!!

Julie, are you saying you want to go off of wellbutrin and take clonodine instead? Cause clonodine is for high blood pressure (even though I have low, they were hoping it would balance me out). I just needed that question answered first. Since one's an anti-depressant (wellbutrin) and one's a blood pressure med (clonodine), you can't substitute one for the other. Clonodine seemed to make me calmer and why I don't know, but it wasn't because it was an anti depressant. As far as taking clonodine with a beta blocker, yes you can. Lot's of people do. Blood pressure meds help to lower or raise BP, while Beta Blockers are used to slow the beating of your heart (for tachy). I'm super senstive to meds also and cannot seem to find anything that doesn't make my symptoms worse!! Good luck.

Yeah James!!!! That gives me hope that I too can return to work. Good for you and that positive attitude. Just keep it up and like morgan said above, try not to overdo!!!

Hi Emily! So sorry I didn't post on this!! I cut the patch in half .1 to .5 and even though I did notice some benefits, like a calmer feeling, it made my heart beat harder and I was more constipated (and I'm already in major pain from that daily), plus my blood pressure just kept getting lower and lower. So I took it off last Thursday. I may try the pills at some time. Right now I am trying a new blood pressure med (it's for high BP as well...errrr, why can't they make as many low BP meds as they do high?? ). It's called coreg. I'm taking a tiny dose and so far it hasn't lowered my BP but hasn't helped either. I feel a little dizzier and spacey on it but will keep trying it. So sorry you are having SUCH a hard time in your POTS hole! Steph and I are praying for you really hard! Thanks for checking up on us. That sounds like something you'd do, check on us in your time of need! Take care and I'll check in with ya soon!!! (ps: steph hasn't had her latest surgery yet, she'll keep you posted on that)

Hi Cordilia! I am new too but can tell you I already feel right at home with everyone here. Stick with them, they will help you in your deepest of POTS Holes. I read a lot of the older posts to help with a lot of my questions. Welcome!

Hi, I'm sorry I can't offer any suggestions, as we are all so different as to what we deal with, so I'm in hopes someone else can elaborate on your physical symptoms. I think it is very wise that you are going to a major medical center. We can offer some advice on this site and help and pray but when things seem to worsen like you say your symptoms have, it's so important to go to your doctor or a new one at that! I will be praying for your upcoming appt. As for decongestants, I stay far away from them even in misery because they make my heart race even more out of control. Keep your positive attitude, it is key, and as much as these doctors seem to devastate us more most of the time, keep your hope alive that you will find a keeper. Keep us posted.

Oh Morgan, I don't know you that well like the others but I can sure send warm prayers your way. All we can do in moments of total dispair is let others hold us up in our weakest of times. Feel our warmth and prayers and let us stand in the gaps for you. It is during the times when we are too distraught to pray that we have to let others do it for us. Let us know about your son's test. I am very familiar with tests and tumors and femurs and thinking that life can't get any worse. I will prayer for a benign result. I survived cancer to only discover I had POTS but I'm still here and kicking. Your son will get through because of your and your families love and so will you. It will a get better. Hang on!!!!!!!!!!!!!!!!

I agree with the above posts! I am new here and you have all been so welcoming and comforting. I am truly humbled. Earth Mother, you brightened my spirit last night more than you know by one of your posts to 'future outlook' and same with you Merrill. Gosh I could thank so many of you guys. It's so very hard to stay positive most days, but I know helping others takes the focus off of ourselves and our own dire situations. I'd rather worry about others than myself. But as Merrill says, take the time for yourself and vent away. You all are such special, special people. We are closer on this site than most people we have known our whole lives because we share this common bond. You all are in my prayers and I'm praying for brighter days of sunshine for you...

Well AMEN Earth Mother. I needed to hear that! I hope everyone reads it. It is so true! We waste any spare time from POTS (is there any of that though really! ) blaming ourselves for what we can't do or be or feel like and we have to try and saver the little moments and accomplishments we can do. I give myself a gold star now when I can go get the mail at the end of my short drive way!!!! We aren't weak or crazy or lazy, we are sick and trying to deal with a disorder that we didn't ask. Thank you for this post!

Purplefocus, hmmmm.....we are all so very sorry for your losses. I wish there were magical words of wonderment I could share right now to make all your pain go away. Only time will be able to heal your wounds and right now you have to rely on those around you as well. I know you want to be the strong one for your boys and that is so admirable, but they also need a strong mom in days to come as well so please don't try and be a superhero. You have been going on adrenaline and now it seems to all be crashing down. However you can, take a breath, find a quiet space, go to the bathroom if you have to, just try and calm yourself as best you can. Be angry, it's okay, God is big enough to handle your anger. He can handle your anger at your health, your anger of the losses in your life, the anger, disappointment, devastation, unfairness, everything. Let Him have it!!! There is no sense to any of this and we wonder where God is in moments like this, but I assure you He is there. It's so easy to get lost in the bitterness of this world and the unfairness of it when things seem to all happen at once. As upset as you are, try to trust, try to keep your faith, and try to remember that as horrid as this all is, with each new day things will get better. They will. Try to live for those you've lost and remember their smiles and warmness. I pray their memories will keep you warm. We all love and care for you. Please be still and feel our prayers...

Hi Monica, I'm new to this site, but not new to this disease! I'm in the same boat too and it's hard not to get all our questions answered right away because of the panic feeling that comes from the heart palps and adrenaline and wanting our lives back...NOW! As for all your questions, everyone is so individual and we can only say what has and hasn't helped us. My bp is around 80/50 and heart rate resting is 110 but any activity and it shoots way up. I just feel like my heart is thudding against my chest wall. I will every now and then have some pain but it's not everyday, maybe someone else can answer that. Some take anti-anxiety meds. (ativan, klonodin, xanax). I would also like to find something natural. The reason our heart rate goes up and we feel it so prominently is because our hearts have to beat faster to compensate for the low blood pressure. Got to get that blood pumping and back to our brains! I believe that a lot of the ringing is do to yeast and sugar in our diets. I have tried to cut sugar and most carbs out and that has helped with the ringing but others may think differently. This is just what has worked for me. I drink salt water and not gatorade to avoid all the sugar. It's gross but desperate times call for desperate measures and honestly I don't think it helps all that much. I have always eaten A LOT of salt and my BP stays low. And I think we are supposed to do it everyday and just more when we are having episodes. I too tried Magniesim to no avail. I used a subliguel (it's a liquid that you hold under your tongue and then swallow). Sometimes I thought it helped but not during the bad tachy episodes. Compression hose didn't work for me to raise my BP. Just made me hot and sweaty and itchy but again they worked for some. I tried to raise the head of my bed, but I also thought it seemed counterintutive. Again, didn't help. I haven't flown in years because of this but others have, so maybe you'll get some feed back on that. Boy I didn't help you ANY. Sorry! Guess I'm just trying to say, we are all individual and it's trial and error for us all. I keep trying things like beta blockers (to lower heart rate), midodrine and florinef (to help raise bp), and Ativan. I'm just one of those people things didn't work for and I'm super sensitve to meds. The only thing that helps me is Ambien to sleep and I used it before I started having major symptoms so just think my body was use to it. Hang in there, in time you'll feel more comfortable with Dysautonomia. If there were any quick fixes, we'd all have done it. Just listen to your body, try things in small doses, know you are NOT alone, and keep researching. It's the only way I have understood better why my body does what it does. The two most helpful articles I read were one explaining the autonomic nervous system and why we feel everything so much more than others (because our sympathetic nervous systems are stuck) and an article by a patient Chris Calder. http://www.isma.org.uk/stressnw/parasymp01.htm http://home.att.net/%7Epotsweb/POTS.html Stick with us!

I also didn't have any luck on Florinef even on the lowest dose cut in half. I was extremly dizzy and spacey and it didn't raise my BP but I am very sensitive to meds and can't take hardly anything. Can't hurt to try it though, it does help some people. Good luck!

Hey Danelle, I'm thinking of you. I wanted to emphasize also that you are not a weak person!!! Our bodies are very sensitive and when our sympathetic nervous system is stuck in fight or flight mode like ours, everything feels like an emergency. I too never get sleepy or can take naps. It doesn't seem most POTS patients have this. At some point they seem to calm down or get some sleep but for me AND I AM NOT EXAGERATING, I haven't been sleepy in 2.5 years. If it weren't for Ambien at night I wouldn't sleep a wink. You'd think we'd be exhausted (which we are mentally, physically, and emotionally) but as far as feeling sleepy and getting some actual rest, forget it! My body stays SO wired, I don't even know what it's like to yawn. Everyone I tell this to always says, "Oh how nice to have so much energy!" And I'm like "Uh, no, I feel like I'm in a crisis and going to die all the time!" Of course I never say this, I just smile and nod! Here is an article that I think you'll find most helpful. It sounds like our parasympathetic system never takes over and calms our sympathetic system. A good way I remember how to keep each system straight is this. Para sympathetic (Para - as in paradise, it's calming) Sym pathetic (Symp - as in symptoms and we ALWAYS have awful symptoms) http://www.isma.org.uk/stressnw/parasymp01.htm Hope this helps. tammy

I've been fainting since I was nine years old, so have had this almost all my life. I just didn't know it was called POTS until 2 months ago. I learned to live with it. When I was 20 (1995) I developed a very rare nerve cancer that almost took my life. (did a year of chemo, 2 months of radiation, and had 3 surgeries). After that my symptoms kept worsening. In October 2002, I started having uncontrollable heart palps and anxiety from over active adrenaline and haven't been able to get rid of it. Since Jan. 2005, I have not been back to work and do not see any improvement with meds. I have become very sensitive to them and the slighest dose makes my 110 resting pulse go to 150. Glad some are doing better, I pray I will to!

I've been on the patch two days now and yesterday afternoon I felt awful! I was very lathargic and weak and couldn't even hold my head up. At dinner time I could barely chew my food and I my bp was in the 60/40s range. Heart rate 58 (mine's usually 110). I emailed my doc and he said to take the patch off or cut it in half (I'm on .1), so I cut it in half. I had a much better night and even though my bp is still really low, I feel SO much better. Go figure. I'll keep you all posted.

Hi Corina, I am a new member but I have to tell you your post sure inspired me! Just to see your strong will and never give up attitude has lifted my sagging spirits. I think you're amazing. Hang in there new friend!!! I'm praying for your appt. in April.